August 26

I tend to think of myself as an optimistic person. Through all of this I have always been looking to the next good thing to happen. We have been fortunate to have things go well so far, which makes me hopeful that they will continue to do so.

I suppose because of my optimistic nature, I have never really thought of it in these terms: Cael has a life threatening condition. Several babies die of SCID because they are not diagnosed early, then they end up getting an infection that kills them. Any of the infections that Cael has could be one of those infections that kill a baby who is not diagnosed. The pneumonia he has, PCP, is a deadly pneumonia that only affects those who cannot fight it off. Everyone else in the world will encounter PCP, but their immune system will just fight it off. RSV only affects small children. An adult who encounters it would just get a cold, and most babies will be sick, but get over it in a few weeks to a month or so.

If there is family history of SCID, then a baby can be diagnosed at birth, have a bone marrow transplant before 3 1/2 months, before ever having an infection, and have a 96% survival rate. The older the patient, and the more infections the patient has had, the lesser the odds. The overall survival rate for bone marrow transplants in SCID patients is only 60%-70%.

Cael is not the typical SCID patient. A typical patient will be diagnosed only after being malnourished/having troubles gaining weight, has experienced several bad rashes, and is very sick from an infection that will not go away.  Cael is not malnourished, he hasn't had lots of rashes, and he is still energetic and happy. However, Cael has several infections, so in that aspect, he isn't doing so well. Still, Cael has some thing in his favor (good nutrition, not malnourished, no rashes). I am hopeful that the things that are good are going to give him better odds.

We are very optimistic about his transplant. They have several possible matches, and some very experienced doctors working with us. We will continue to be positive and look forward to the next good thing that is happening.